I’m paranoid, how are you?

As the title of the post suggests, I’ve been dealing with some paranoia on and off for the last couple of months, which means med changes a.k.a. being a pharmaceutical guinea pig. The paranoia flared up again last week so I’ve been thinking and reading a lot about psychosis, and it’s something I feel should be talked about much more openly. We can’t humanize or destigmatize something if we don’t talk about it. Of course, this is an anonymous blog – but hey, it’s a start. I promise I’m a real person.

First let me clarify what I mean by paranoia. For me, at this time, it ranges from “that person hates me and wants to harm me somehow” to “the government is watching me every time I leave my apartment.” The first could potentially be true. The second is less likely to be true, although let’s face it, the government does have the capacity to watch us, so it’s more a matter of whether the government actually cares about me in particular, which it probably doesn’t. A lot of my paranoia centers around law enforcement, which was triggered by an actual (recent) bad experience with a police officer, and is also grounded in the reality that mentally ill and/or autistic people are more likely to be harmed in encounters with police than the average person because their behavior seems “suspicious” even when all they’re doing is talking fast or stimming with a piece of string (does that make the police paranoid?).

And that’s what I really want to talk about: how these delusions can be grounded in real and legitimate fears. The popular view of psychosis is something totally irrational and arbitrary. Well, it is irrational, but I don’t believe it is arbitrary. I just recently read Elyn Saks’ memoir The Center Cannot Hold (which I highly recommend). Elyn Saks is a professor of mental health law who also has schizophrenia. She has benefited from medication, but also from psychoanalysis that was not afraid to address the content of her delusions. Traditionally, psychiatry has treated the content as irrelevant.

There is definitely a distortion that goes on in my paranoid thinking – what are the chances that my husband is accessing a secret database of information about me for nefarious purposes? not great – but the underlying psychological impulse can be rooted in reality. I mean, in this example, the internet does have a scary amount of information about us, which can be misused. It’s just unlikely that my husband will be the one to misuse it.

My experiences with other people have not been overwhelmingly positive. Thanks to my social awkwardness, misleading body language, and emotional instability, I have the distinction of turning lots of people off. I look angry when I’m not. I say the wrong thing, or neglect to say the right one. As a child, I was a magnet for bullying from peers and psychological abuse from adults who didn’t like me. Sometimes the peers and the adults collaborated.

So when someone passes me in the hall at my son’s school and I think they are giving me strange, hostile looks – how much of that is real, how much is me misinterpreting their facial expression, and how much is mild paranoia? It’s tough to say.

I crave friendship, human connection. I want to believe the best of people. But over and over, they hurt and disappoint me. That is not conducive to trust.

There are a few awesome people in my life who get me, who have stuck with me through thick and thin. They are the reason I’m not homeless or continually in and out of mental hospitals. They are a very small and vital minority.

I guess I’ll stop there, since it’s a semi-positive note. I don’t want to give too much away, in case someone from the government is reading.

(Just kidding! Or am I? *cue suspenseful music*)


Straddling the Autistic/parent divide

The division in the autism community between autistic adults and parents of autistic children is one that I find particularly frustrating, because I belong to both groups and feel allegiance to both.

On the internet, I have encountered some intense hostility from autistic advocates who know that I’m a mother, but don’t know that I’m autistic myself. This hostility was not provoked by anything other than me being an “autism mom”. I support and identify with the neurodiversity movement, I don’t want to eradicate my son’s autism, and I am not seeking accolades for being an “ally.” Incidentally, in these conversations, I do not feel the need to identify myself as autistic or mentally ill or otherwise neurodivergent. I shouldn’t have to disclose my neurology in order to defend myself as a mother.

I have also encountered hostility from other “autism moms” when I objected to attempts to make murders (and sometimes torture) of autistic children somehow about the child instead of about the parent. Fortunately, most of the moms I know both in person and online, are as horrified by these stories as I am; but there are certainly some out there who will try to make it about how hard parenting an autistic child is, instead of the parent being a sadistic person who preys on the vulnerable.

There are things that are worth being angry about – the example I just gave is one. But most of the arguments I see online between parents and adult autistics are not about things like this. I see people from both groups starting out from a place of defensiveness and/or hostility, resulting in conversations where they are talking past each other, with very little attempt to come to a mutual understanding. Example:

Parent: “My son wears a harness that I can grab onto when he bolts during a meltdown.”

Autistic: “That’s horrible and degrading. Your child is a PERSON, not a dog.”

Parent: “Not everyone is as high-functioning as you.”

Autistic: “Functioning labels are ableist!”

The parent comes away from this conversation thinking that adult autistic advocates completely don’t understand what it’s like to parent their child, and therefore their perspectives are not worth listening to. The autistic comes away from the conversation thinking that autism parents believe their children are essentially animals. But from the beginning, both are making assumptions about the other: the parent is assuming that the autistic person is mildly affected and cannot understand their situation, and the autistic person is assuming the worst about the parent’s motivations.

Here’s an alternative version of the same conversation:

Parent: “My son wears a harness that I can grab onto when he bolts during a meltdown.”

Autistic: “Is that really necessary? It seems degrading to me, like you are treating him like a dog.”

Parent: “Yes, unfortunately, it is necessary right now. He’s been almost hit by cars so many times, and I’m not willing to take that risk. Also, he tells me that he finds the harness comforting, like a hug.”

Autistic: “Huh. OK. I still don’t like the idea.”

Parent: “I’m not crazy about it either, but I like it better than the idea of my son being dead.”

Notice how, in the second conversation, the autistic person’s severity level and the issue of functioning labels didn’t come up – because they are, actually, not relevant to the issue being discussed. Shocking! At the end of the conversation, these two individuals may not be in complete agreement, but they each understand where the other is coming from. They don’t come away believing the worst about each other.

Can’t we have more conversations like that?


I have an alter-ego. Her name is Supermom.

Supermom wears makeup, which she compulsively checks in the car mirror because any imperfections in her mask might let her real self show. She dresses nicely. Maybe a little bit too nicely for such mundane occasions as grocery shopping and driving her child to therapy. The clothes are from thrift stores and from relatives who didn’t want them anymore, but you’d have to look closely to see the holes.

Supermom might be tired from getting up at 2:30 AM, but she has her shit together. She keeps detailed medical records and educational records. She makes to-do lists. She’s on time to IEP meetings and parent conferences. Usually. She schedules appointments and keeps them.

Supermom is comfortable with social interaction. Mostly. If she’s not, it’s just because she got up at 2:30 AM and she’s really tired …. It’s definitely not because she’s autistic or struggling with paranoia.

Supermom is mentally stable and does not need medication in order to function in day-to-day life.

Supermom does not have any weird political opinions.

Supermom is an advocate. She argues with doctors. She fires therapists. She files formal complaints. She keeps records and paper trails.

Supermom is involved in all of her kid’s therapies. She also implements the therapies at home on a daily basis, due to her endless amounts of energy and patience and lack of personal needs. She makes visual supports and uses them consistently.

When Supermom comes home, she wipes off her war paint, and there’s just me.

I laugh, I cry, I make terrible jokes, I feel overwhelmed, I struggle to keep my eyes open, I get mad, I yell, I apologize, I hug my son, I make silly faces, I stomp like a dinosaur. I put on a TV show and let him eat 3 boxes of yogurt raisins so that I can sit on the couch playing word games online. I rock back and forth and flap my hands. I take my meds. I grapple with self-doubt. I get worked up about politics. I slack off on therapy strategies. And I really do get up at 2:30 AM to give breathing medications and comfort and love.

I’m not sure how many people my Supermom persona actually fools – maybe no one. But I’m aware that I’m expected to try. At least try to pretend to be superhuman. And how my son is treated, the services and supports and medical care he gets, depends on my trying.

So I do. You’re welcome.

Visibility, accessibility, and judgy people

First of all, let’s get something straight: “invisible” and “physical” are NOT opposites.

A mental or psychiatric disability can be visible. For instance, when you see someone totally disheveled, walking down the street muttering to herself, you probably figure she’s got something going on mentally, like schizophrenia or a really, really, really bad day. A psychiatric disability can also have physical effects, like when you are so depressed you physically cannot get up to go to the bathroom, and brushing half of your hair feels like running a marathon; or the more extreme instance of catatonic depression.

Even more common is for a physical disability to be invisible. Examples: lupus, fibromyalgia, having a feeding tube and/or ostomy bag unless you are wearing a bikini, multiple sclerosis, cystic fibrosis, and many others. Some, though not all, of these impair mobility.

Often, the line between “physical” and “mental/developmental” disability is not at all clear (probably because our brains are part of our bodies? just a wild guess there). How would you categorize a traumatic brain injury? What about Tourette’s, which is neurological but causes physical movements? What about Down Syndrome, which is developmental but often accompanied by problems like heart defects and metabolic problems, and has distinctive (visible) physical features?

The line between “visible” and “invisible” is not clear either. The same disability may be visible at some times, invisible at others. And whether or not it is visible may depend on other people’s knowledge and perceptiveness. Does “visible” mean it must be automatically visible to every sighted person? Does “invisible” mean nobody can tell, even someone very familiar with disabilities?

My son Monkey has a disability, but most people don’t see that when they look at him. There are actually some visible signs: he wears SMOs, for instance, and you can see them over the tops of his shoes, but most people don’t notice or know that they are a form of brace. (Even higher braces – AFOs – are often covered by pants.) He wears an Alert Me band on his wrist with emergency information, but most people don’t register what it is; I’ve had another mom ask me if it was a watch. For that matter, when he wore oxygen full-time, somebody once asked me whether it was because he had allergies. (Yes, because that is a totally normal reason for a young child to be on oxygen ….???)

Basically, to many people, the only “visible” disability is when both your legs have been amputated and you’re being carried on a stretcher while not wearing prosthetics. Using a wheelchair is not enough, because if the person using it stands up a little bit to reach for something on a shelf, these folks will assume that the individual is just using the wheelchair out of laziness, or for attention, rather than because they need it.

Anyway, back to Monkey. He receives physical therapy at school. He has low muscle tone throughout his body, which means that he fatigues more easily than most kids. It also makes it much harder to lift and carry him; imagine trying to hoist a 43 lb bag of flour into a shopping cart. Now imagine that the 43 lb bag of flour has legs and you are trying to stuff those legs into the leg holes of the cart, and the bag of flour is not cooperating … a couple months ago I launched into some rather loud cursing in the checkout line at Target for this reason.

But why was I trying to put Monkey in the shopping cart in the checkout line? Because he was repeatedly attempting to elope. This whole shopping expedition, mind you, had not gone well; he was already dysregulated before we went; but there were some things I had to get. I usually tag-team with my husband, or we all go together on the weekend and I shop while he manages Monkey, but sometimes he works late or goes on business trips and I have to go to the store. This was one of those times.

Now, Monkey is a runner, which means he will suddenly break away from his adult and bolt – out of a building, into traffic. This is especially dangerous in parking lots. He was already attempting to run, so I knew that the only way I could get him through the parking lot along with the groceries without him bolting in front of a car was to have him seated in the cart. Which he is just about too big for, but technically he fits. It has never been easy to put him in these carts, but this particular day I just could. not. do. it. Physically couldn’t manage it. And I started cussing. I lost it. People were staring at me, probably thinking I was an abusive mother, and I don’t blame them.

I thought about this incident last week, when I learned about Caroline Carts. I thought about it again when I saw that our Target actually has one. If you don’t know what a Caroline Cart is, here you go.

The likelihood is pretty high that one of these days, I will end up using one of these carts for Monkey – not on a regular basis, but on expeditions like the one just described. But when I do, I can only hope that the nasty looks and comments are kept to a minimum. Because yes, my son can walk (and run). And no, he is not “visibly” disabled – unless you know what to look for. I dread a store employee or a vigilante coming up to me and telling me what a horrible person I am – the sort of thing that happens to people who don’t “look” disabled who park their cars (legally) in disabled spaces. Even more than that, I dread some mother of a child who is visibly disabled, challenging me. Because while I would be happy to turn over the cart to somebody who needed it more, I’m afraid she might think that I didn’t need it at all, that I was being callous, that I was utterly different from her. And I’m not.

We still use a Britax stroller (again, due to elopement and low muscle tone) even though Monkey is at the upper limit for height and weight. He gets tired and wants to be carried, and we simply can’t carry him any real distance; the stroller keeps him comfortable and safe.

Last Saturday, the three of us enjoyed a stroll around the mall, visited some shops, grabbed snacks and coffee. We got some looks and even a glare as Monkey climbed in and out of his stroller, as we pushed him around. I’m glad that “Too Big for a Stroller” tumblr thing isn’t still going, because someone probably would have snapped a picture of us. Dear people at the mall, my child is not lazy. He’s not spoiled. He is big for his age and has disabilities.

I’ve been unable to get into a building because Monkey was in his stroller and I couldn’t find a wheelchair ramp. I put him in the adaptive swings at the park; they are the only way he is able to swing. If no family bathroom is available, I change him in the accessible stall in a public bathroom, because I need the space. At home, he has adaptive equipment to help him use the toilet.

Physical accessibility matters for us. It affects our daily lives.

But you probably can’t see that.

Please don’t judge.

Neurodiversity’s gatekeepers

I read this yesterday, and I want to link it here because it’s so good and so important: Dr. Simon Baron-Cohen Does Not Understand the Neurodiversity Paradigm

Here’s a quote from the article:

“The Neurodiversity Paradigm says that all brains are good brains and no one is disordered or in need of a cure or treatments that work to the detriment of their personhood.” – Max Sparrow

I passionately agree with this interpretation of the neurodiversity paradigm. Unfortunately, Dr. Baron-Cohen is not the only one who espouses the view that if a condition affects one’s functioning beyond a certain point (defined by whom?), it is no longer a “difference” or part of the person’s identity, but a “disorder” to be cured by any means. I hope that the people who see it this way are in a minority, but I don’t know that they are.

Here’s another example of this type of thinking:

“Autism is a natural form of human neurodiversity. Labeling it as a “mental disorder” or a “disease” has no scientific basis, has no benefit for Autistic people or their families, and leads inevitably to stigmatization, shame, and marginalization. Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that Autistic people are disabled and can require accommodations. Stop worrying about the latest changes to the DSM’s diagnostic criteria, and just remove autism from the DSM entirely, just like homosexuality was rightly removed years ago.” – Nick Walker (emphasis added)

Ohhh, OK, I get it. Having autism is fine, because it’s not a mental disorder. Better take it out of the DSM so that the stigma from all those mentally disordered people doesn’t rub off on us! And if an autistic person has a comorbid mental illness, we’ll just stigmatize them for that, not for the autism.

To sum it up another way:

Blind = “Hey can you teach me to read Braille?”

Deaf = “I really admire your culture!”

Physically disabled = “Thanks for the curb cuts!”

Autism = “Natural form of human neurodiversity.”


I think of people who think this way as Neurodiversity Snobs. They are the self-appointed gatekeepers of the neurodiversity movement. They stand at the gate, checking everyone’s credentials:

“Ah, I see you have a job and you’re married? Quirky but brilliant? Go right in.”

“Wait a minute, wait … this says you’re psychotic and frequently homeless? I’m sorry but you can’t go in. You make a bad impression and … you’re just not really our type.”

“Hi there. Looks like those accommodations in college really worked for you! Well, go in, they’re just serving the cocktails.”

“You’re intellectually disabled? Um … I’m not sure what happened but they shouldn’t have sent you here. That was a mistake. Yeah, just head over there to the Eugenics Division, they should help you out.”

Fuck that. Seriously, fuck it.

I reject any articulation of the neurodiversity paradigm that excludes certain people because they don’t have the “right kind” of neurodivergence.

“Least restrictive”? Disabled spaces and reverse inclusion

This post is not about parking spaces (sorry to disappoint). It’s about education, and also adult social life.

Under IDEA, mainstreaming of disabled students in regular education classrooms is seen as the goal of special education. As much as possible, students are to be educated in the Least Restrictive Environment. (The least restrictive is a general education classroom, followed by a mixed or inclusion classroom, followed by a “self-contained” classroom in which all the students are disabled.) Similarly, organizations that work with disabled adults at least pay lip service to the notion of including them in community life as much as possible.

Regardless of practical shortcomings, the goal of inclusion is obviously a HUGE step forward from where we were only decades ago, when disabled people were placed in crappy institutions, often denied an education, and in other ways automatically segregated from mainstream life. And the risk of going back to that is frighteningly real. There is plenty of push-back right now from people who would like to see disabled students out of regular classrooms (for example this Alabama board of education member or our current attorney general); and cuts to Medicaid services like home nursing, which allow disabled people to live at home and in their communities, could potentially force many into institutions.

So before I go further, let’s get one thing straight: Inclusion in one’s nondisabled communities is a human and civil right for disabled people of all ages. PERIOD.

Now that that’s clear … I have some problems with inclusion as it’s currently conceptualized.

First of all, I don’t think the language of “restrictiveness” is a helpful or accurate way of looking at different educational placements. I understand where it came from historically, but I think we can do better. Instead of talking about a classroom of disabled students as a place where they are restricted or restrained, why not speak of it in terms of support and environmental modification?

The preschool Monkey attends is described on the district website as “the most restrictive” option for his age group. That’s because the majority of students who attend have IEPs. In Monkey’s class, there are slightly more kids with IEPs than typical peers. All the students are taught by a special education teacher and aide.

I really have no idea what is “restrictive” about any of this. Class size is smaller than the equivalent Head Start classrooms, meaning it’s quieter and the kids get more one-on-one attention. The school facility is quite nice, with big outdoor and indoor play areas and lots of fun sensory toys. There’s a full-time nurse just down the hall with his medications on hand, and individual and group therapies taking place in the classroom or OT/PT gym. I don’t see any of this as restricting Monkey’s freedom or ability, but the opposite: it’s supporting those things. (He loves it, by the way.) So why don’t we call it “the most supportive environment” or “the most accommodating environment”? Does that not sound negative enough?

I’m not advocating for euphemisms here. I’m just wondering how, for example, self-contained classrooms might look different if we conceptualized them in terms of “most accommodating” instead of “most restrictive”. Providing the necessary amount of accommodation for an individual student – not restricting them in some way – is what a self-contained classroom should be for. It should be for students whose needs can’t be accommodated in regular classrooms. If a student can function and learn with accommodations in a regular classroom, then they should do that. They should learn in “the least accommodating environment”! Hahahaha. (Seriously, though, I went through mainstream public school and “least accommodating environment” is a pretty good way of describing it.)

Recently, I took Monkey to the “sensory-friendly” time at a children’s museum. He enjoyed it and I did as well. There weren’t many people, they did something to the lighting to make it less annoying and there were little soothing “sensory break rooms” you could creep off to. Monkey was able to borrow noise-reducing headphones, which helped with all the white noise from the exhibits and from people walking and talking in echoey hallways. (I seriously considered borrowing a pair myself. Next time.) And all the other families had autistic members or a related disability, so we didn’t get any weird looks or feel out of place at all. It was awesome.

(But maybe I should say “restrictive” instead of “awesome”? I mean, the whole environment was modified to accommodate disabled people and the people there were either disabled or supporting a disabled person, so really … restrictive.)

What I’m trying to get at is that there are often ableist assumptions in the way we talk about inclusion. Aside from the “restrictive” language, a situation can be created where a person thinks “Hurray! I’m almost normal. I get to be with normal people.” I suspect this is especially an issue when the disability is developmental, intellectual or psychiatric, as opposed to a physical disability. If you hang out with developmentally disabled people, you can see this internalized ableism in the way they compare themselves to other, “more disabled” people in their own class or group home or community center. The hierarchy of “less disabled”/”more normal”=better is imported into the disabled community.

But if we’re not allowed to have a disabled community, a positive disabled identity, then we’re stuck with – at best – the almost belonging of being the not-too-disabled person in a room full of typical people. Which is why, while exposure to and interaction with nondisabled peers is important (after all, there are more of them, and they’re always going to be around, and some of them are even pretty cool), I think we should also encourage the formation of disabled groups and spaces, where disabled children can feel a sense of safety, pride, ownership and unequivocal belonging, where they are not the odd ones out. Ideally this would include teens and adults with disabilities, as well as younger children. And then, once this space and this community is established, there is the potential for reverse inclusion: bringing nondisabled/neurotypical peers into the disabled setting.

I’ve been in reverse inclusion settings, where I’ve been in the “normal” minority. I toured a living history museum with a group of students from the local Deaf school. I’ve been to a dance that was for adults with Down Syndrome, cerebral palsy and related disabilities (most fun dance I’ve ever been to) and other similar events. In high school I sometimes would hang out with a friend of mine and her boyfriend who were both intellectually disabled; that was an informal instance of reverse inclusion. Let me tell you: your mindset shifts when you’re the minority; when you’re not the one including them, rather they are including you.

Imagine this: what if parents wanted their typical children to get a spot in their neighborhood school’s autism classroom because it was just so great? “It’s small, the teacher’s wonderfully patient, the students all get individual attention, they have lots of hands-on learning. Oh and you should see all the cool OT equipment! I sure hope Maria gets into the reverse inclusion program!” Wouldn’t that change the way we all think about special education and disability?

I have more thoughts on this subject but I’d better stop for now. I’ll end with a quote from Ian Brown’s beautiful book The Boy in the Moon. Brown’s son, Walker, had CFC with very significant intellectual disability. The first half (roughly) of the book is memoir. The second half is really a philosophical exploration of disability, especially developmental and intellectual disability. In his attempt to understand Walker and to get inside his world, as well as to find the best residential placement for him, Brown went to France to stay in a community for disabled people called L’Arche. He also visited a similar community in Canada. Towards the end of the book, he writes:

“These days, I have a fantasy of my own. In my fantasy, Walker and people like him live in a L’Arche-like community with the help of assistants. It’s a beautiful place, in a beautiful spot, with a view of the sea of the mountains, because for once, in this place, it isn’t just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful […]. In my fantasy, it is the rest of us, the normals, who have to be ‘integrated’ into their society, who have to adapt to their pace and their place.” (271)

I share that fantasy.

My autism is not my son’s autism. Or is it?

When I was in college, I became friends with a fellow student who was diagnosed with Asperger’s Syndrome. I started reading about Asperger’s and was struck by how much it sounded like …. me. I’d been searching for years, my whole life really, for some kind of explanation as to why I felt so different from everyone around me, had so much trouble making friends, and was always offending people without understanding what I’d done wrong – and here was the first explanation that really seemed to fit. It also fit with the sensory challenges I’d had all my life, with my intense obsessions, my physical awkwardness and clumsiness, my need for routine, and the various self-soothing behaviors that I now know are forms of “stimming.”

I told my parents and they said “No way.” Then they read some books about Asperger’s, called me back and said, “Never mind, you definitely have it.” They consulted my old psychiatrist, who said something along the lines of “Oh, that explains a lot!” And so I embraced the notion that I was indeed on the spectrum.

Until I got a job working with autistic adults.

These adults were at the other end of the spectrum from me, to the extent that the spectrum has “ends.” (I think of it more as a scatter plot.) All the scariest-sounding behaviors people think of when they think autism, these folks displayed. They needed 24/7 supervision and maximum support. I liked them; I liked working with them. But it put my own challenges in perspective.

And then the DSM V came along and Asperger’s was no more. I continued to think of myself as having some autistic traits, but not really actual autism. I didn’t dare lay claim to the same label that, for my clients, was so encompassing, so disabling. In some ways, I related to them and felt that I understood them. At the same time, there was plenty that I didn’t understand; and my own great privilege in having a husband, a job, and the ability to more or less communicate my thoughts, was very very evident to me.

Then I had a baby. And that baby had all sorts of medical problems and delays. And then my baby grew into a little boy and was diagnosed with autism.

Around that same time, my therapist suggested that I’m also on the spectrum, and I had to confront, again, from a new perspective, just what exactly that means.

Only time will tell the level of support that my son needs long-term, but I know this much: he has challenges that I never had as a child. I was not delayed in speech or self-help skills. I didn’t leave buildings by myself, bolt in front of cars or wander into bodies of water. I was sufficiently aware of my body’s boundaries not to injure myself and others on a regular basis. I didn’t lose skills, become so anxious I’d stop eating or drinking for days, or have insomnia and GI problems that required medical management. On the other hand, my son already at the age of 3 has more language than my adult clients had, and many other skills are incipient or emerging.

Some people, often parents of individuals with severe autism (i.e. those that need maximum support), feel that we need different names for the mild and severe ends of the spectrum. I completely understand where they’re coming from; I feel the same way at times. The problem is all the people, like my son, who are somewhere in between those ends. Not only are they in between the extremes, but they are all over the map in that in-between area. That’s why I think of it more as a scatter plot than a spectrum. And if that’s the case, if there are points all over the map, then where do you draw the dividing line?

I do believe that autism is an umbrella term. There are autisms. Similar behavioral profiles with various etiologies and various degrees of disability. Genetic causes (including some known chromosomal anomalies), environmental causes, combinations of the two. Comorbidity is characteristic of autism, which adds further variation.

Rett Syndrome used to be grouped together with autism spectrum disorders; now it’s understood to be a distinct disorder. That may very well happen with other developmental disabilities that are now grouped under “autism.” But until it does, until we can scientifically sort this stuff out, it seems better that instead of fighting with each other, we use our commonalities as a starting point and try to learn from the huge variety of experiences on what is currently the spectrum.

That goes for both parents and autistic individuals. Autistic adults who need only some minor accommodations to live independently, and who want to dispute that autism is a disability in any but a socially constructed sense, need to pay attention to those who are undeniably disabled by their autism. (None of that “It’s not the autism that’s disabling, it’s the comorbidities.” That’s a cop-out.) And parents of nonverbal autistics need to listen to those at various points on the scatter plot who are able to communicate verbally (not necessarily vocally!), and have their assumptions about their child’s inner life continually challenged. (No, I’m not saying that inside every autistic person is a hidden genius. But there are parts of every person that are unknown to their parents and caregivers. Profoundly disabled people are no exception to that.) Most of us, whether we’re autistic or parents of autistics, are hurting, which makes it hard to be open to others. Even so, let’s try to listen to one another’s experience without discounting it.

It’s OK to make distinctions between severity of symptoms and levels of support needed, as long as we don’t use those distinctions to set up opposing camps. Lines can divide, but they can also connect and become beautifully complex shapes.